In 1999 during the Pittsburgh TCI Convention the Marfan Foundation also had their conference also in Pittsburgh. TLC had me interviewed by Dr Reid Pyeritz as a person concerned if I had Marfan Syndrome, which I didn’t. As it turned out, Dr Pyeritz misdiagnosed me and said I had Kleinfelter’s Syndrome in which a male has an extra female chromosome whereas I have an extra male chromosome.
The contributors to the film didn’t know each other at the time,, Many years later I would meet Joyce Maddox at a Marfan Conference in Chicago. I also met Sandy Allen in Pittsburgh. Since then, Sandy and Jonathan Greener have passed.
I had posted links to 2 segments of the pre-release of the documentary on facebook and they cancelled my post for reasons I don’t understand, so I am posting the links here.
Part 1: https://youtu.be/AHqzeIoMEKY
Part 2: https://youtu.be/br466y7Ht1U
Joyce and I have been contacted by parents since this program aired back then to say we enlightened them about following up with doctors for symptoms their kids had but didn’t know how to deal with, seeing similarities in us.